Comment by _DeadFred_

Comment by _DeadFred_ 8 days ago

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↑This. Stop. No. Don't go down the false hope path. It's cruel AF and puts off acceptance, wasting time that they can put to better use post acceptance.

Maybe let your friend explore what they want to do and you just give support. Celebrate what they celebrate and cry with them when they cry. Find(or better make) them some comfy/cute hats. If you want to research the things about the hospital, the procedures they are getting, the oncologists they are seeing, and drop re-affirming 'you are getting the best care'. They want to feel like they are getting good treatment. Not like 'if only they got something else they would have a better chance'. But reality is, they are getting the care they are going to getting. Hype the heck out of it, reassure them. Even if the care sucks, find something to hype. Ease the 'if only' burden/regret/fear on them, don't contribute to it with 'if only you could go see Joel Olsteen's prosparity preaching in person and he blessed you' or go see John of God in Brazil or something. If nothing else hype that the WHO ranked France in best overall healthcare. Leave out the 'in 2000'. 'Thank god we are in France, who the WHO ranked best in overall healthcare'. Find things for them to take comfort in.

https://www.who.int/news/item/07-02-2000-world-health-organi...

UniverseHacker 8 days ago

Personally, if I were dying and someone kept saying fake nonsense like "you are getting the best care" I'd probably cut off contact with them, or at least wish they would stop. I'd know I'm getting mediocre care like everyone else, that's also part of accepting the reality of the situation. I'd know my doctor probably graduated at the bottom of his/her class or else he/she wouldn't be an authorized provider on an HMO- and he/she probably can't understand or doesn't read the latest medical research on his/her own. And that probably doesn't matter one bit, because the "best care" wouldn't work either.

I might also want them to share technical ideas they think might help, or at least I would tell them if I wanted them to or not. If you decide to experiment on yourself, you can still accept the reality of a terminal illness. For me, that would be part of ending my life with dignity- knowing I sincerely tried to understand and solve the problem my own, and share what I learned with others, just like I did in the rest of my life.

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  • Earw0rm 8 days ago

    The best care is not necessarily the best bleeding-edge treatment.

    Most medical jobs are only possible at all (without burning out and destroying the person doing them) through them mostly acting in accordance with best practice and training.

    The ultra-rich don't have markedly better survival from nasties like GBM than the rest of us, unfortunately, so if better exists, it's not something money can buy.

    And where some degree of survival can indeed be bought, the medical industry does at least have a solid record of scaling it out to the professional classes, even if the poor go without.

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    • UniverseHacker 8 days ago

      > The best care is not necessarily the best bleeding-edge treatment

      It's mostly a conceptual thing for me. As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind.

      For example- I do have a doctor that is a hacker/nerd/scientist that also teaches college biochem courses for fun on the side and he was about to prescribe me a medication, but then based on an offhand comment I had made, realized I've had a number of bad reactions to medications that he knew off the top of his head were metabolized by the same liver enzyme as this new medication. This guy keeps a book about drug metabolism biochemistry on his desk, and the cover is nearly worn off from use.

      I most likely have a SNP in that enzyme, that would have given me another bad reaction. This is deep nerdy biochem knowledge he was not going to get from any official protocol that led to better and safer care. The biggest problem here is we like geeking out on this stuff so much, he almost forgets to actually treat me when I visit him.

      I've had other doctors that even if I had noticed the potential P450 enzyme issue myself, would refuse to listen because they have a fundamentally non-technical mindset, combined with ego issues about being the expert- that are usually made worse not better if I mention that I have professional expertise and training on the underlying biology.

      In truth, I'll admit it is both quite rare to get any real benefit, and legally risky for the doctor to deviate from guidelines based on direct knowledge or understanding.

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      • kerkeslager 6 days ago

        > As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind.

        I recognize your appeal to community here, and I reject it: this isn't the hacker/nerd/scientist mindset, this is just you inverting the appeal to authority. Hackers/scientists don't accept statements as facts because they come from authority, but they also don't reject statements as facts because they come from authority. Authority is not a basis for accepting OR rejecting facts--authority is completely irrelevant in the establishment of whether something is factual. The hacker/scientist mindset doesn't require that the person in front of you understand the reasoning/evidence behind the protocol--it only requires that there exists valid reasoning/evidence behind the protocol.

        Notably, in this case, the vague "some authority" you refer to is generally an organization that has collected a lot of reasoning and evidence on which to base their official protocols. The general practitioner doesn't understand all that reasoning and evidence because they can't--the human body is way too complex for one person to synthesize all the data on all the various things that could go wrong and treatments. Your general practitioner is merely there to execute treatment accurately, not to understand the treatment. Executing the treatment accurately is bloody hard enough.

        If you don't trust the authority to do the research and come up with effective protocols, that's one thing, but if you don't trust the guy in front of you to execute the protocol accurately, because they don't understand all the reasoning behind it, it's you that's being irrational. Basing your opinions in reasoning and evidence is good; rejecting protocols which have been reasoned and evidenced because of some weird variant of identity politics isn't good.

        Ask yourself this: Do you really understand how an OTC allergy pill works? Do you trust yourself to administer one to yourself? Why doesn't your hacker/nerd/scientist mindset prevent you from trusting yourself to administer a pill, then?

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        • UniverseHacker 4 days ago

          You are completely misunderstanding me- I am not talking about rejecting things just because they come from an authority.

          I fundamentally reject that experts can make universal medical protocols that can be blindly applied by ignorant practitioners without high rates of really bad outcomes. It is done to execute cheap commodity medicine at scale, but it will never compare to having medical care from someone with deep understanding and individual context.

          These type of context-free ignorant protocols will frequently do things to patients that are wildly inappropriate and dangerous in a way that would be obvious to people that actually know what they are doing, but completely missed by the average doctor. For example, a patient with regular bloodwork where every single kidney function related lab result is on the very edge of the acceptable range, but they're all marked green by some official cutoff, so the doctor doesn't even notice the biological pattern being presented- and is blindsided when the patient comes back later on with serious nephropathy.

          Even worse- intelligent people that understand the evidence and the biology will self select out of even participating in developing such protocols- because the whole concept is nonsense. So these protocols are themselves mostly ignorant and outdated, and not developed by competent people.

          One cannot commodify technical knowledge into simple protocols, especially with something as complex and poorly understood as biology. The only time this is optimal is in something extremely routine with no impossible to anticipate exceptions, or in an emergency where there is no time for careful problem solving: e.g. as checklists are used in aviation. In medicine they are only appropriate for first aid type situations.

          Yes, when I have a health problem I generally read the scientific literature and understand it before accepting any treatment, unless it is an emergency where I am unable to. I do understand the mechanism of action for most of the OTC drugs (or as much as is known of them), and I am much more reluctant to administer OTC drugs to myself than most people are. For example, I would not take a Benadryl unless I was having a serious allergic reaction, because of the known risks of anticholinergics. I have a decades of training and scientific research experience in studying and modeling the biological mechanisms of drugs, and have patented drugs that are in clinical trial.

          The following quote sums up my opinion of medical protocols better than I can:

          "Knowledge isn’t a commodity, especially not a fungible commodity, as the medical business sees it. Consciousness and culture are part of the life process. It is exactly the commoditization of medical knowledge that makes it dangerous, and generally stupid. Doctors buy their knowledge, and then resell it over and over; it’s valuable as a commodity, so its value has to be protected by the equivalent of a copyright, the system of laws establishing the profession. Without its special status, its worthlessness would be quickly demonstrated. When A.C. Guyton wrote his textbook of medical physiology (the most widely used text in the world) in the 1950s, it was trash; as it was studied and applied by generations of physicians, it was still trash. The most compliant patients who bought their treatment from the most authoritative, Guytonesque, doctors were buying their own disability and death.

          Each time you learn something, your consciousness becomes something different, and the questions you ask will be different; you don’t know what the next appropriate question will be when you haven’t assimilated the earlier answers. Until you see something as the answer to an urgent question, you can’t see that it has any value. The unexpected can’t be a commodity. When people buy professional knowledge they get what they pay for, a commodity in a system that sustains ignorance." -Ray Peat, PhD

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  • graemep 8 days ago

    Definitely true, and I know that its common for people who are terminally ill to feel the same.

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ungreased0675 6 days ago

My friend, you are on a website called Hacker News. This isn’t Normie News where we stick with the most common solution for things.

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mllev 8 days ago

I guess hope can be false now.

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  • selenography 8 days ago

    Sure, if by "now" you mean "at least since Geoffrey Chaucer's time":

    > And thys vyce cometh of false hope that he thynketh he thall lyue longe, but that hope fayleth ful ofte.

    [1] https://www.google.com/books/edition/The_Workes_of_Geffray_C... [2] https://books.google.com/ngrams/graph?content=false+hope&yea...

    Or, come to that, "at least since Cicero's time":

    > ...cui legi cum vestra dignitas vehementer adversetur, istius spes falsa et insignis impudentia maxime suffragatur.

    [3] https://anastrophe.uchicago.edu/cgi-bin/perseus/citequery3.p...

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  • _DeadFred_ 7 days ago

    If I let playing the lottery change how I interact with the world/prevent me from dealing with my situation, because I hope I will win, that 'hope' is a negative impact on my life.

    If I encourage my friend who is down on their luck to buy lottery tickets so they can have hope, am I helping them, am I being kind?

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  • JumpCrisscross 8 days ago

    > guess hope can be false now

    "Hope is false if it is based on ignorance of the correct assessment of the probability that a desire is fulfilled or on ignorance with regard to the desirability of the object of desire. Hope is justified—realistic—when the hoping person knows and accepts experts’ judgement about the probability of hope fulfillment. However, I argued, what matters for evaluating a person’s hope is not only whether it is realistic, but also whether it is reasonable in light of the aim and goals for which the person strives in (the remainder of) his life

    ...a person’s hope that an (experimental) treatment may prolong his or her life or improve the quality of his or her life can only be called false when he or she thinks that the chances of personal benefits are greater than those estimated by experts. If he or she does accept their judgement, continuing to hope is realistic. Hope is moreover reasonable if it contributes to realizing what a person strives for in (the remainder of) his life" [1].

    [1] https://pmc.ncbi.nlm.nih.gov/articles/PMC6900746/#s10

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    • mllev 8 days ago

      I agree that the probability of a desired outcome is valuable information. But to call being unaware of this information “false hope” is a blight on our language. Hope is hope. It’s quite proven that believing a certain outcome is likely increases the likelihood of that outcome.

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      • JumpCrisscross 8 days ago

        > to call being unaware of this information “false hope” is a blight on our language

        False hope is still a form of hope in the same way a red car is still a car.

        And it’s useful to delineate it. Hope is rooted in expectation. When we watch a film about a fraudster, the dramatic irony arises from the audience knowing the rube is being played even while the rube is quite hopeful. We may conclude it’s better for the victim to live in false hope. But again, it’s useful to understand it’s a hope that’s false (and that someone is making that decision for them).

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        • mllev 7 days ago

          If false hope is still hope the way a red car is a car, then false also has no meaning in this context. Would a false car still be a car?

          I agree people should be informed and manage their expectations. My issue is that it’s a terrible expression that gets misapplied constantly.

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    • hnfong 8 days ago

      Hope is premised on the basis that nobody knows the future 100%.

      Experts can give a mostly-frequentist analysis based on past medical cases.

      The unknown part is whether those cases apply to yours.

      And nobody knows.

      All the so-called probability is meaningless. It matters not whether your chances of remission is "99%" or "1%". Those numbers are meaningless in a specific case under a specific situation.

      I understand this is not the commonly understood notion of probability, but the common notion is simply wrong.

      I'm not saying experts are wrong, I'm happy to assume that their analyses are quite correct when applied to a population. I'm just saying the common way of interpreting their statistics onto one specific case (the one you care about) is wrong, because you can't just plug the probability onto a single person/case and round it off to zero or one.

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d--b 8 days ago

Errr. So your point is I should be reassuring my friend, by telling him he’s getting fantastic healthcare.

I don’t get it. My friend doesn’t need reassurance. He doesn’t need to take comfort in the fact that France has good healthcare. He’s going to die and he knows it.

I am here just because I want to tell him: if you want to try something crazy, and it may not work at all, there’s this. If you prefer not to, that’s fine too.

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  • _DeadFred_ 7 days ago

    Yes, my point is you should be putting your friend with a terminal condition at ease so that they can skip wasting any energy on regretting their healthcare situation thinking they would have lived 'if only...', and you should help them enjoy/process/maximize their remaining time.

    I get what you want and why you are here, I do. Been there done that for friends and family. I lost my mom, don't think I didn't try to find every treatment, and for me she did them all no matter the pain/loss in quality of life it inflicted on her. In the end watching Joel Olsteen gave my hippie/anti christian progressive mom comfort so guess what, anti-organized religion me sat and watched Joel friggen Olsteen with her as she accepted and processed her situation, while inside I screamed 'noooooooo, we can't accept this! NOOOOOOOOOOOOO! Mom no, I can't lose you, and our final time can't be spent watching Joel friggen Olsteen!'. And on that final day, when she was suffering in worse pain than I can Imagine, I put on a brave face and told here it was OK mom, she can go now, she can have peace now, while inside I screamed 'you can not goooo! The world will end if you go!!!! You can't leave me, ever'.

    Do you really think anyone is saying 'you can go now' inside when they tell someone it's OK to go? Do you really think everyone thinks their local medical care is the absolutely best in the world when they say 'man, good thing you got Doctor X, good thing we have this facility'?

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    • d--b 5 days ago

      I get what you’re saying, but I think there is too big a cultural difference for your advice to make sense for us.

      Sorry for what you went through though, sounds like it was really painful.

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